It’s hard to believe it’s been 12 years since I had my first proper brain assessment. Since then, new ways of looking at the brain have emerged and software updated. As well as my vision. That’s what I first noticed when I walked into the ADD Centre, Mississauga office — how blue it was. No, they assured me, they hadn’t repainted since last time I was there in 2015. Same blue. A specially chosen shade too. Whoa. What used to look pale, barely blue to me was so very very blue. My improved colour perception from 2016 eye surgery has stayed!
Dr. Lynda Thompson has also changed the order of the tests because they found that people were too tired to do the computerized neuropsychological testing at the end. And she also took the elastic out of the EEG full caps. No more headaches. Bonus!
Everything else was the same though. The endless questionnaires at the start that remind me too much of the shit IMEs I was subjected to year in and year out for almost 8 years. I noticed that the questions didn’t actually get to the heart of my PTSD. Depression and anxiety scales don’t accurately measure the effects of flashbacks, triggers, startle responses, vigilance, breaking of human trust and bonds, or memory fragments that intrude and relentlessly distract when you’re innocently reading a funny story with your neurodoc for reading rehab that then needs to be processed and soothed over before you can continue. People like me who suffered a brain injury from a car crash will, I think, come with PTSD from the crash, the way insurers treat you, and the wonderful abandonment of family and friends fleeing you while hurling insults on their way out. Yeah, those legal files I recently had to fact check my book against still slamming my emotions around.
Anywho, after the questionnaires came the IVA. No more headphones but a speaker. Easier since headphones usually tried to slip off my head. But I could hear all the voices through the solid walls and door — I have acute hearing and a distractible brain. Kind of weird since my ability to focus is pretty good now. But it seems group attention and distractibility remain impaired.
My CNIB orientation and mobility trainer guided me on the long public transit trip from Toronto to Mississauga and from the bus stop to the office. I could see signage so much clearer. Wow. I kept stopping to take that in and let my brain regroup as it worked to integrate the increased information in with the old.
As part of guiding me there and at Thompson’s suggestion, he observed a lot of the testing so that he could report back to his boss at the CNIB. So many are blinded by brain injury; maybe, this sort of assessment and treatment could help them. Some of the tests though would have to allow for voice over or magnified text or adjusted for auditory only. The IVA he thought had enough contrast and size that many could see and do it.
I was a bit peeved that the Start Bar popped up as the IVA test began, distracting me and making me miss seeing the first “1” until too late to click the mouse. But I settled in after that, reminding myself regularly not to let the Start Bar or voices through the walls distract me. And not to let myself fall asleep from the utter boredom of the 15-minute IVA and even worse the 20-minute TOVA, the kill-me-now 5-minute Continuous Performance Test in the neuropsychological test that followed (which almost sent my CNIB trainer asleep — where’s that “B”?!! for her to click already, he kept thinking), and the final 10-minute timed Reaction Test at the end of the full-cap 19-point EEG evoke testing. Oh. My. God. That last one I thought I was going to fall over comatose and miss the large circle. I clicked on a small circle just to wake myself up and express my pissed-offness at the endless staring at the screen, waiting to see the large circle so I could finally click the mouse. I guess I shouldn’t have done that. Mess up my score, eh? But I figured the Start Bar had messed up my IVA, then I moved in the TOVA to wake myself up and accidentally clicked, so might as well go for a hat trick.
The big BIG difference between me at this week’s assessment and before was that I felt solid. My brain felt coherent, solid, knew what I was doing, and what I was looking at. I didn’t feel unsure if I’d missed a “1” in the IVA or if that was a bottom square in the TOVA that just flashed off or if that was a “B” or not in the CPT or if I was confusing small blue circle with large. Well, OK, the length of time between large circles was so long, I worried I wasn’t recognizing the large ones anymore. But when I saw one, I knew for sure it was large and as the test went on, that the small ones were small. (When you first practice this evoke reaction test, you can’t distinguish between large and small blue circles. But by the end, somehow, they come to look different in size.)
Another brain change: I always knew there was a pattern in the IVA. But this assessment, I actually saw it at a conscious level. It helped to make the endless 15 minutes go by quicker for the first time! I counted off each pattern change so I knew how much was left. I also anticipated when the “1” would show up in a sequence of “2”s and vice versa. The TOVA pattern is a little more random, but visible enough for me to use it to help me. The CPT and evoke tests were almost too randomized; but I picked up the pattern of endlessly flashing non-click letters or shapes before the target one appeared then back to endless non-click ones since not very likely to be more than two target ones in a row.
Pattern recognition has always been something that allowed me to still navigate the world after my brain injury. It kind of made me look like cognitive functions were working better than they were. But it’s not been at this fully aware level before during testing. Neat. Weird.
The Drs. Thompson weren’t there during my assessment. First time ever! I felt like I was experiencing the next generation. I’ve long known the ones who assessed me, and it was nice to see them more knowledgeable and having grown in experience and competence. But I missed talking to Michael about the latest research he was investigating and Lynda about my IVA and TOVA results and some of the new things they were doing. I’ll be getting my results over the phone from her when they’re all in as my CNIB guy can’t help guide me back to the Mississauga office a second time (it was a one-time only mutually beneficial trip), and I’m not yet solid and confident enough on public transit and wide intersections to do it on my own after only one practice. I’ll have to practice more in Toronto in these areas before I can.
My EMG was pretty good. Even during training now, it’s better than it has been for months. I’m wondering if that’s because I’m no longer working on the edge of my ability and in a chronic state of deep exhaustion, which I have been since I began Cogmed and then wrote and edited Concussion Is Brain Injury at the insane pace CCAC set for me with my rest period gobbled up by intense emotional stress.
Ever since the big-nausea week and big improvement that followed, my brain has continued to change. (My brain trainer noticed too: Humour is improved. Resilience is better. More positive in mood. Reading quicker. Recall improving. I didn’t notice myself that about my humour.) During the tests, I could see the screen and office in a 180-degree-view unlike all the times before because of the eye surgery. And that feeling of solidity when doing the tests, I’m also feeling now in phone calls with banks or interactions with offices I have to go to. I think it’s my treatments healing my brain of that confusion about what I’m perceiving/hearing that had wreathed my brain since the injury. I still have it, but in fewer situations and at a very very reduced level. My ability to remember what I was talking about despite continuous and sustained interruptions is also back. Nice.
For the first time since 2000, I’m not stressing about test results, counting down the days, or worrying if they’ll show the damage I’m experiencing. Maybe it’s because I’m working on my book — hoping for a September release! — or maybe it’s because my cognitions are markedly better to the point that I’m no longer in a state of desperation. The emotional shit is another issue, but as long as I can write and work on my books, I manage. For now anyway.